WESTERN SAN JUANS – Denise Geddes has suffered from lymphedema since she was a baby. Her leg was often swollen but nobody really knew why. Now in her 40s, the Ridgway resident recalls doctors being mystified by her condition when she was growing up.
While a freshman at Ouray High School, Geddes developed a blood clot in her affected leg, which sent her to the hospital for a month. There, finally, she received a diagnosis: primary lymphedema.
Lymph is the interstitial fluid that inhabits the space between the cells of the human body. It’s in charge of removing extra fluid in the cells, and removing toxins. People with lymphedema get chronic tissue inflammation (most often in the extremities), caused by accumulation of lymph fluid that isn’t flowing properly.
The diagnosis did little to make Geddes feel better. Doctors back then didn’t really know how to deal with the condition. They prescribed a slew of medicines over the years. None of them helped.
The lymphatic system tends to be strangely misunderstood. Most people are familiar with the lymph glands in their neck, which get swollen and tender at the onset of a soar throat. In fact, the human body has 750 lymph nodes – 450 in the abdominal area alone.
In all, the average person’s healthily pumping lymphatic system processes about two and a half liters of lymph per day, boosting the immune system and keeping tissues throughout the entire body healthy.
Unlike the cardiovascular system, the lymphatic system has no central pump. Lymph travels through a network of conduits and nodes via a subtle process of diffusion and peristalsis (propulsion due to alternate contraction and relaxation of smooth muscle), and can become stagnant when the process isn’t working right.
Some people, like Geddes, are born with the condition. This is called primary lymphedema. However, it is much more common for lymphedema to present later in life as a secondary condition – often as a side effect of cancer treatment or obesity. Today, in the US alone, 10 million people are diagnosed with some form of the condition, Geddes said. Many more go undiagnosed.
Left untreated, lymphedema can progress to stage II, with a progressive hardening of the affected tissues, and stage III, characterized by a tremendous increase in lymph volume and a hardening and thickening of the skin and tissues beneath – sometimes referred to as elephantiasis.
Things never progressed that far for Geddes, but she did face a crisis during her pregnancy with her now-teenaged daughter. Her leg filled up like a water balloon and her knee swelled to the size of a basketball. The skin stretched over it all turned a funky gray color, she recalls. Her doctor wanted to cut the whole thing off.
But Geddes was adamant – “I really wanted to keep my leg,” she said.
There is no cure for lymphedema. But filled with resolve and armed with the dawning capabilities of the Internet, Geddes found her way to The Földi Clinic in Hinterzarten, Germany.
Geddes, who now lives in Ridgway, remembers meeting with her assigned doctor, the first time she went to the clinic in 2001. “He asked me to line up all of my meds on his desk,” she said. “There were about 12 of them, ranging from diuretics to potassium, all fighting against each other. Then, he started flicking them into the trash and told me, ‘You can’t take any of these for lymphedema. It doesn’t do any good!’”
The most effective treatment for lymphedema, as pioneered by Dr. Ethel Földi, turns out to be the simplest, and least invasive. Földi’s system of Complete Decongestive Therapy (CDT) consists of manual lymph drainage (MLD – a special type of massage that stimulates lymph flow), compression therapy (wearing bandages and compression garments), decongestive remedial exercises (often as simple as lots of walking), nutrition therapy (no “wasteful fats,” no alcohol, no caffeine...) and hygienic measures for the prevention of acute skin infection.
This regime is complemented by herbal remedies with lymph-cleansing and mood-lifting properties.
Seven weeks and $18,000 later, Geddes walked away from the clinic healthy and transformed. She had lost nine liters of fluid from her body. “I left in a size 16 pant and came back in a size 9,” she said. “When I stepped off the airplane, I walked right past my daughter and husband and they didn’t even recognize me.”
Dr. Földi convinced Geddes to become a specialist in the field, herself. Over the past several years, Geddes has done just that, becoming a Certified Lymphedema Therapist, a Certified Nursing Assistant and a Certified Massage Therapist who travels the Western Slope and beyond as a consultant advising patients and doctors on lymphedema, and administering MLD treatment. Her Lymphedema Lifeline Foundation, established in 2007 and centered in her home in Ridgway, offers support and vital information to those suffering from the condition she knows so well.
“Being a lifelong patient makes me a specialist,” she said. Her dream is to open a nonprofit pediatric lymphedema treatment center in Colorado.
But for now, Geddes is expanding her mission by establishing the first annual Western Slope Lymphedema Awareness Day, scheduled for this Saturday, March 3. It is the first event of its kind to be held on the Western Slope of Colorado. Presented by Geddes’s foundation, the day-long conference is free and open to the public. Events are scheduled from 9 a.m. to 4 p.m. in the Saccomanno Conference Room at St. Mary’s Hospital in Grand Junction.
The mission of the conference is to provide information about regional and national medical resources and practical educational information about lymphedema to health care providers, patients, their caregivers and loved ones.
Keynote speaker Dr. Brian Degenhardt, D.O. presents “Defining Lymphedema for the Patient, the Physician, and Its Treatment,” from 9:15-10:15 a.m. Degenhardt is an eminent Western Slope osteopath specializing in Osteopathic Palpatory Diagnostic and Therapeutic Studies, who lives in Ouray and has a clinic in Ridgway, but also frequently travels to teach and speak.
The morning session also includes a presentation by Dr. Sheila Ridner, PhD, RN, FAAN, who is based in Nashville, Tenn., where she has been active in lymphedema research since 2000. Ridner presents “Lymphedema Research, Past, Present and Future,” at 10:30 a.m.
Additional presenters include Katie Donohue, RD (Healthy Eating); long-term cancer survivor Fran Bailey (secondary upper extremity experience); Denise Geddes, LS, CLT (primary lower extremity experience, Complete Decongestive Therapy); and Kristy Reuss, RN, PhD (Making Lifestyle Changes).
For more information about the upcoming Lymphedema Awareness Day, call Geddes at 970/261-2308, email email@example.com or visit lymphedemalifeline.org.